Breaking Down Barriers to Transgender Health and HIV Care
Part One of a Two-Part Series Exploring Perspectives on Transgender Health Access and Advocacy
June 6, 2012
Olivia Ford: Danielle, you mentioned that people of trans experience are often denied health services at the point of care. Can you talk more about that?
Danielle Castro: There have been several studies done. The National Center for Transgender Equality, in collaboration with the National Gay and Lesbian Task Force, released the report Injustice at Every Turn: A Report of the National Transgender Discrimination Survey, which includes some phenomenal work looking at access to health care. They found that people were outright denied care when trying to access preventative care if they disclosed their trans status.
Most doctors are not trained on how to work with trans people, trans bodies. They get very little information in their medical schools. There's fear and lack of awareness -- and discrimination and ignorance, of course -- when it comes to providing services for trans people. Oftentimes health care providers will ask irrelevant questions that have to do with something other than what the presenting issue is, out of curiosity.
For example, I was hospitalized last year for pneumonia. You know, I could not breathe. I was getting breathing treatments and steroids. This was in West Palm Beach, Florida; I was not home in San Francisco, so there was that layer of feeling uneasy, besides not being able to breathe.
The attending ER doctor started to ask me about my transition, and about when I had my gender confirmation surgery, and was just talking to me about trans issues. I told him, "I can't breathe, Doctor. I need help with that. These other questions are irrelevant to my care."
I was admitted to the hospital, and the nurse that was attending to me asked me when I got my breast implants. Everyone's assuming that I've had these procedures; they haven't asked me if I had them or not. I told the nurse, "It's none of your business. I don't need to disclose what's going on with my body. I'm here because I have pneumonia, and this is irrelevant." I expressed how angry I was. Then I needed help changing my robe, and as she was helping me, she made it a point to look under the robe, to see if my breasts were real or not.
These are the kinds of things that happen, that really create that barrier to finding competent health care. For me, it just creates another level of fear when I go to access services.
Tei Okamoto: Going back to the issue of health insurance: A lot of trans individuals apply for health insurance, and they're denied once they disclose their transition-related history. Even if somebody is accepted, most insurance policies exclude trans-related services. This means that procedures like hormone therapy won't be covered. And if trans-related services are not excluded in the policy, insurance companies still might deny the claim, based on the procedures being deemed cosmetic.
The Patient Protection and Affordable Care Act (ACA) makes coverage available for individuals who have a pre-existing condition, have not had insurance for six months, and are legal U.S. residents. In New York State, this is called the Bridge Plan. While this plan is a viable solution for some trans people, it poses a problem for those who do not have legal resident status. Also, it poses a problem for people living with HIV who can't wait six months without insurance before receiving proper care.
Devarah "Dee" Borrego: I'm a recipient of Medicaid; and as a transgender person, once I complete legal gender change under the eyes of law and under the eyes of my insurance, they will no longer cover whatever male-specific health needs I may have. That's certainly an endemic problem as far as the insurance issue, and it speaks to the fact that the insurance industry as a whole doesn't understand the fact that people of trans experience have varying medical needs and will need insurance that's able to cover all types of services, from mammograms, to anal Pap smears, to any number of specific health issues that could come up for transgender people.
Unfortunately, this also comes back to the fact that there's not a lot of data around some of the more specific health challenges that occur with HIV-positive transgender people. There's very little data on interactions between antiretroviral treatment, and hormone replacement therapy. There's not a lot of data on incidence of breast cancer in transgender women, and how that might affect HIV-positive women, especially. These are all medical issues that really directly affect HIV-positive women.
Olivia Ford: Errors and blatant affronts, really, made by health care providers with respect to transgender clients, have come up several times in this conversation. What are some common errors that providers make in their interactions with trans clients?
Tei Okamoto: One of the common areas is gender markers. Most medical facilities have a number of gender-specific spaces that might make trans folks feel uncomfortable, like gender-specific bathrooms or medical forms. These things can really deter patients from seeking medical care.
"When are gender markers relevant? When do you ask questions like 'What was the sex you were assigned at birth?' Who needs to know that? Does everybody need to know that? Does a primary care physician need to know that?"
-- Tei Okamoto
We talk a lot about this in providing care at APICHA: When are gender markers relevant? When do you ask questions like "What was the sex you were assigned at birth?" Who needs to know that? Does everybody need to know that? Does a primary care physician need to know that? Furthermore, does a receptionist or a bus driver need to know someone's gender? Shouldn't they address the individual standing in front of them as they are presenting, or feel like they can ask politely if appropriate?
We're really looking at what the relevant questions are and, through this, creating a much more comfortable and trans-positive space.
We also think it's really important to keep in constant communication with our patients, to ensure that their medical needs are being addressed, and ensure that they're staying healthy, and avoiding high-risk behaviors. In my experience as program manager, I find that trans people really appreciate when I call and follow up, or when I take some time with them -- because there may be another question, or something, that they forgot about when they were seeing their physician. And sometimes, that forgetting is because they're so traumatized being in a medical system. Being able to debrief after seeing a primary care physician has been a really good thing for our trans patients.
Devarah "Dee" Borrego: Some of the points that I've noted for myself as far as common errors were specifically around the provider or the support staff using the wrong pronoun, or using the wrong name, directly with the client. I think it's really important that the entire staff be on the same page about what a client's preferred name and pronoun are.
The use of legal name and gender is certainly a requirement on some legal and medical paperwork. I think there needs to be explicitly clear conversation and communication from the staff about when and why that would occur, and where it would be needed. And in these places where it is not required by law, the client's preferred pronoun and name should be the only thing used. That's a very large, endemic issue.
Going back to what Danielle touched upon earlier, regarding overly intimate and inappropriate questions, specifically around surgical or hormonal clients, from uninvested parties: I personally have had nurses or other support staff asking me very intimate personal questions about my own transition or plans for transition, when it really has no bearing on their ability to do their job, or provide the services they need to provide for me at that exact moment. It can be a traumatic enough experience as a trans person even getting to the medical provider -- getting trans people into the actual room and into care. Just interacting with the people in the world that you must interact with to get there creates a barrier already. When we feel that we're going to be bombarded with questions that are inappropriate, it can be very de-motivating to even want to go in the first place.
Danielle Castro: Medical providers make mistakes all the time, in general. For trans communities in particular, medical providers often don't understand how simple it can be to provide primary health care and HIV care for trans people. One of the mistakes that providers make is having assumptions about all trans people -- thinking that everyone is on the road to transition to "another side" to become part of the heteronormative gender binary.
What I've seen is that health care providers are afraid to ask questions around gender identity, and aren't sure how to phrase a question. As care providers, we need to ensure that we understand how to ask the question about preferred gender pronouns, what body parts am I working with, what do you call them, how can I address your body parts to be respectful -- really having sensitivity around that.
Most health care facilities don't have policies in place that protect trans people. They need to incorporate policies that don't allow for discrimination against any population, especially trans people. But just having those policies is not enough. I think it's important to have training for entire staffs of a health care facility, from the reception area, to security personnel, to janitors, all the way to the providers themselves, ensuring that they know how to work with trans people.
Another common mistake is that there aren't very many trans-identified people working in health care settings. Hiring trans people really promotes an environment of acceptance. If someone knows that trans person, word is going to spread: "Wow, there are trans people here. This is an accepting space."
Regarding HIV care: From what I've seen in my work throughout the country, I think doctors tend to use withholding hormones as leverage for people to take their HIV meds. I really disagree with that. If someone is sick and they need help, they need the medication. Not providing them with other primary care options like hormones is ridiculous to me.
I could go on and on. I have a laundry list. But those are some of the main things that I've seen.
Olivia Ford: What I'm hearing from all three of you -- and particularly Danielle and Dee, speaking about negative personal experiences -- is that part of the issue as far as provider error seems to be that providers are afraid to ask questions, or to explore what questions they should ask; and then those who aren't afraid are asking the wrong questions. I would never expect anyone to speak knowledgeably about individual providers' thoughts or motives; but in your opinions, based on all three of your experiences watching and working with providers: Do you get the sense that, in some cases, they're trying, and failing, to make a person feel comfortable by trying to appear as if they know more about trans issues than they do? Where do you think the tendency toward excessive intimacy -- or just blatant, inappropriate curiosity -- comes from, essentially?
Devarah "Dee" Borrego: I think this question not only applies to providers within a medical context, but with people in society in general. I would like to think that people don't have negative motivations when they're trying to find these things out. I think it's really just curiosity, and trying to understand and put such personal trans experience within their own, generally heteronormative, context.
People of a general heteronormative experience, and even people within the queer community, will have their own predisposed ideas as to how a transgender person should fit within their own framing of the world. I think that really is what motivates people to ask these questions, because they feel that they are entitled to know every aspect of our lives as trans people, whereas that's not the standard that everyone else is held to.
"People, and health care professionals in particular, tend to be curious. I think that's where the questions come from. Seeing a trans patient is like a learning opportunity, all of a sudden, for themselves -- which is selfish, unprofessional and misguided."
-- Danielle Castro
Danielle Castro: I talked briefly earlier about the National Center for Transgender Equality's study. It found that 20 percent of 6,450 trans and gender-variant people were subjected to harassment in medical settings. And 2 percent were victims of violence. Fifty percent reported having to teach their medical providers about trans care. Those are really atrocious numbers to me -- especially that 2 percent were victims of violence in health care settings. That piece tells me that there are haters, straight up; there are people that are close-minded, discriminatory, and unwilling to open their minds.
On the other hand, I also think there's some innocence to this. People, and health care professionals in particular, tend to be curious. I think that's where the questions come from. Seeing a trans patient is like a learning opportunity, all of a sudden, for themselves -- which is selfish, unprofessional and misguided. I think that the antidote is to educate ourselves.
People that aren't aware and don't know anything about trans people: I wonder if they still exist. But that curiosity really comes up in any setting.
Tei Okamoto: It's an interesting phenomenon. I've been doing HIV work since the early '90s. I remember when people used to ask, "Oh, they have HIV? How did they get it?" It doesn't really matter how they got it when it comes to understanding, first, that the person in front of you is a human being that deserves the highest quality of care. I think today we hear people ask that question less and less. We use models of how people became infected for prevention purposes, but we don't have those kinds of questions running around our offices or organizations in that way of it being about curiosity. Like Danielle says, hopefully there isn't anybody out there who hasn't heard of transgender individuals and transgender communities. Hopefully everybody has been touched by the issues in this population.
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